WhatsUpWithJacob

Up til now, Jacob's been using Young's digital camera for his photolessons with Tammy, but last week she decided he was ready to learn to shoot film. She took us out to Purisima Creek and taught him how to use her own camera.



With only 10 shots on a roll of film, he practiced taking his time composing the image. He learned how switching to a different lens changed his composition, and how to use an external light meter.



And he discovered that sometimes you have to get wet to get the great shot:



I still can't get over Tammy letting him put the tripod in the creek.

Sunday was was Jacob's thirteenth birthday. Ahead of time, Young and I worried because Jacob is still in isolation and couldn't have a big party. Actually it was perfect.

Sabina styled the wig she got for him.


He blew out the candles


And rode his new Go Kart.


Jacob and Alex spent most of the weekend builing an RC car, but I didn't get any decent pictures of it.

Ellie got to ride too.


The sunday before, October 16, was the year and a half anniversary of Jacob's diagnosis.

They came all the way from Philadelphia for Jacob's birthday.

I just got an email from nurse practitioner Karen Kristovich at Packard. Jacob didn't pass the T & B lymphocyte subsets of last immune tests. Foo, foo, FOO.

Jacob took the news more philosophically than I did. The function parts of the tests aren't back, so he could still pass those, and he concentrated on that. The T & B subset results come back in about a week, so retesting them won't necessarily mean another month.

In the meantime, we are entertaining ourselves with projects. Last weekend we did face casting.

We started by casting Jacob's thumb to gauge how to use the materials, which are similar to the stuff the dentist uses to take a cast of your teeth.



Then we did Jacob's face:



The alginate stuff ran all over the place and Alex and Letty and I cupped our hands around Jacobs face to contain it. You can see Alex's fingers in the final casting.



It came out pretty well, but the alginate flexed when we cast the plaster in it, and the shape of the face was distorted, so Alex decided to make a more controlled cast by affixing a modified pink hospital basin (our friends from LPCH will recognize it) to his head with masking tape and wire hangers.



Unfortunately, in our frenzy to fill the pink bucket before the stuff set up, we plugged up his breathing straws and he had to rip the whole thing off before it was done.

We'll try again soon.

A full week late for the Days of Awe (it's just sunset now), but I wanted to say Shana Tova and Happy New Year to everyone.

What better way to celebrate than with an even more belated Chinese New Year (...I'm trying to think of what to call it) Object, a gift from Betty and Denise in Seattle.



Jacob is a Monkey, which is probably not news to nayone who knows him.

Here's the clown sword. It was behind the bookcase:



And here's a picture of Lucy and her moms from a while ago:

One thing that friends can do to help prepare for Jacob's return to school is to get a flu shot. Jacob can't get one, because his immune system is still too immature to mount a useful response to the vaccine, but if the people around him are protected, he'll be much safer.

The soonest Jacob could possibly go back is Oct 26, (if lightening strikes on a blue moon and the last set of tests come back in two weeks - and- he passes them all). More likely it will be mid to late November.

He REALLY wants to go back to school.

Sorry, it's been a long time since the last post.

At his clinic visit today, Dr. Kuo said Jacob's doing so well, he only needs to go in every three weeks: Practically an eternity!

When Jacob goes back to school depends on the results of a complete new set of immune labs drawn today, including those all-important lymphocyte function tests, the ones that took more than a month last time. We shall see. He's been working hard on his school assignments to be ready when the time comes.

Meanwhile, there are other things. Jacob and Alex built a potato cannon, which is a cannon that fires potatoes, fueled by aerosol anti-perspirant, with repurposed electronic ignition. The thing packs a wallop.



Alex found the plans in a fabulous magazine called, appropriately, Make , which describes itself as "The first magazine devoted to digital projects, hardware hacks, and DIY inspiration." and also included, among a great many other things, plans for a go cart made out of a shopping cart (they lowered the center of gravity!) and how to make an automatic cat feeder out of an old VCR.

Young was worried that it sounds as though we are starting an arsenal around here, but it's really about the joy of building things. Jacob and "Big Jacob", Ellie's boyfriend, built a compressed air powered spud gun a few years ago. And years ago, when Alex was little and we were still adamant about no war toys, Young built Alex, who wanted a sword in the worst possible way, a clown sword. I was going to put in a picture of it, but I think it fell down behind the book case. I'll find it tomorrow.

We got the results of Jacob's lumbar puncture and it looks like good news. The amounts of tumor markers (alpha fetal protein and beta-HCG) present were very, very small. Really, this test was a baseline, giving us something to compare future LPs to, so that we can monitor the residual tumor.

Meanwhile, Jacob had a full steam ahead weekend with his friends in the neighborhood, including a fat lip from getting a basket ball in the face. It's nice to know he can take a hit and keep going with a (slightly cockeyed) smile on his face.